A MUM-OF-FOUR suffers from a extremely rare skin condition which leaves her in agony when she is exposed to any sunlight

Lorraine Valentine ended up in hospital for six days after going on her first EVER beach holiday in June last year with her kids.

The 42-year-old paid £3,500 for the trip to Lanzarote, but found she could only go to the beach at night and on her return to the UK, her skin swelled up, leaving her in agonising pain.

The mum, from Bournemouth, Dorset, suffers from the rare disease erythropoietic protoporphyria (EPP) which causes a severe burning sensation when she is exposed to sunlight or UV light.

"Even though I stayed in the shade, I ended up being covered up and in pain wherever I went," she said.

"It was only at night I could enjoy the holiday, going to the beach and exploring the town in the dark."

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Every day is tough for Lorraine who struggles with basic tasks because of her condition

Lorraine was first diagnosed with the potentially life-threatening illness - a rare blood condition which attacks the liver - when she was nine. There is often no physical sign on the body.

Everyday tasks are painful for her such as picking up the children from school and even going into the supermarket as the bright lights reflect on the floor and cause her pain.

She said: "From March to November I completely cover up when I’m going to pick up the kids.

"When it’s boiling hot and I’m wearing boots, jeans, a big cardigan, scarf and a hat, I do get funny looks off the parents. They think I’m a bit strange.

"But I try and do normal things and not let it affect me."

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Even though EPP is hereditory, none of Lorraine's children suffer from it

EPP is hereditary but none of her children suffer from the condition.

"It was difficult for them growing up. When I was crying because I was in so much pain, they couldn’t even hold my hand. The slightest touch puts me in agony," she said.

Lorraine did not want her children Chloe, 18, Elisha 14, Ben, 12 and Josh, 10, to miss out, so they travelled to Lanzarote in June 2014 for a summer holiday.

She bought UV protection socks, to block out sunlight, and booked an expensive apartment right near the pool, so she could stay indoors if needed but still see her children.

She added: "We went in June because I thought it would be less hot, but how wrong I was.

"I had to borrow a fan to sleep and spent most of the evenings in the toilets of the entertainment area putting cold water on my burning feet.

"The kids would give me the ice from their drinks to put on my feet."

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Coming back from their beach holiday was a killer for poor Lorraine

When they flew back a week later, her ordeal wasn’t over.

She said: "I was in such pain, crying and upset. I went through security and left the kids while I raced to get some cold water and some paper towels to try and ease the pain.

"On the plane I cried, trying to sit there for four hours in agony with the pain of full thickness burns was awful. I had the air hostesses get me ice in the end."

When the family were back in the UK, five hours later Lorraine, who is this year running the London Marathon for British Porphyria Association to help raise funds for other sufferers, was admitted to hospital.

She was kept in for six days and had extremely high liver function – one of the side effects of the condition can be liver damage in severe cases. But there is now hope for her and other sufferers.

She is supporting a new drug called Scenesse which is being trialled. The drug acts as an anti-oxidant and activates melanin in skin, providing sufferers with a barrier between their skin and wavelengths of light triggering.

"I’ll battle for this. I’ve suffered for so long and been through so much. There needs to be treatment available," she added.